This story took place June 23rd 2015 the fourth Tuesday of the month. For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group. I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years. I like to be my authentic self. I want to be completely and whole heartedly in the moment so rested is best. Today was no different except for one little change. I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital. So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc. I had it all planned so I thought. An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely. I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen. I ask to help me be all I was created to be. I want to be a good leader. I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying. I was meant to encourage and share hope. For me I feel without prayer I would not be me. Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived. The reply was “I have to cancel” AGAIN. Of course I had 2 choices get upset or live in the moment and be still. I choose the second. So I was quiet and figured well I am early and not in the heat , and not rushing decide to relax before my next stop. As I sat I people watched and then this one couple stood out. I saw this lady and man exiting the doctors office. The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times. I asked if I could help her find something she said ”actually I am looking for water and there is a fountain but no cups.” Me- hold on I think they might have some in the Dr’s office. I went in the office and sure enough they did. I went one step further and filled it with water from a machine. I walked out and gave it to them. The man who I now know and call Mr. Bernie asked me my name ? ( HE OPENED THE DOOR for conversation and this is where it began,) He said I looked familiar. I asked if he had a brain tumor he said no but began to tell me why he was at the hospital and then our eyes met. He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me how he is a retired Chaplain and some of his story about he and his wife. I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories and maybe that was our connection. His wife just couldn’t believe the connections and sat back and smiled. He looked up and said ” I was a Chaplain for many years in hospitals” Communication is vital and YOU HAVE THE GIFT, me- what do you mean? you know how to do it , You know how to communicate with those who need support , care. Your a good communicator. I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE” Me- Oh my goodness do I??? I told him he was going to make me cry I call my son that and my daughter my daughter shine. More importantly I just gave my son a wooden plaque for his birthday a few days ago he turned 26. The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how I wrote no matter how old you are you will always be my sunshine. Mr. Bernie said that he could tell I was SUNSHINE to those I meet . He asked if I knew the words? I said I believe I do. He said sing it with me. He looked at me and then his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him. Here is the what I call the “GOD wink” I could have let the appointment that didn’t happen cause frustration and I would have left. I choose to be still. I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment. On that car ride in to my meeting I prayed and believed I would help all those I was supposed to. Well I DID! and in the process I was blessed before my group even started. Now here is the part that makes the smile even bigger. I chatted with them and walked them to the door to meet their ride. Mr. Bernie shared his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE. Mr. Bernie’s father actually helped write the tune for the song. Mr. Bernie is due back for more surgery soon. I gave his wife my card and told them to call me so I could be his sunshine! I will decorate his room and the only gray that will be in there will be GRAY MATTERS! If we are still and in the moment we may just receive the sunshine we need. Today Mr. Bernie was my #ifonlyforone he was my #sunshine
I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear for my gray today, my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing now and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the BT conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but please keep take a poster. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok they need it. Today he & his sister are my ” if only for one”. I proceed to remove my GRAY RIBBON so I can gift it. I asked Bill ” would your sister wear a ribbon if she had one?” OF COURSE. Well give this to her. It’s a special ribbon because it has a little angel on it and it represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.
This IF ONLY FOR ONE took place Friday Jan. 29 2016. I had a pretty busy morning starting with a meeting at BNI . I always try to maximize my time when at the hospital, today wasn’t any different. I was able to visit #babycarsonsdaddy, great news he is moved back to a regular room in hopes of REHAB soon. I then stopped in the surgery waiting room and was able to encourage several families. One lady who’s husband was in surgery for a tumor like what I had just cried when she heard my story. She said “there is hope? .” We hugged and I told her about group. I reassured her that they are not ALONE! Here is the part I am so glad I didn’t miss. I left the hospital and on to run some errands. I had to return something and while working with the cashier of course BRAIN TUMORS worked its way in the conversation. SURPRISED right? The cashier then says to me I’m glad you are surviving I have a friend who is not. I of course expressed my sorrow. She quickly spoke softly and said ” I don’t talk about that here”. I understand. As I started to walk away she walked along side and said I just don’t talk about it when others are near because she used to work here. So does your friend live local? Yes She is in hospice. She was an amazing person. I asked her name. I almost fell over she told me the friend and her husband names and that the husband is caring for her. They are my brain buddies. The husbands name is not common so we were positive it was them. I then told her I have at home sitting on my counter a list with their name to call as soon as I get home. They were not at group and I have not seen them for awhile and was concerned. I told her I didn’t want her to think I was crazy let me pull them up on my contacts. I asked her if she would verify the last two digits of their number. ” YEP”!!!! I called and the husband was so happy. He said he had showed to group NOV & DEC and he didn’t know we didn’t meet but met with the chaplain instead. While on the phone I could hear him tell his wife ”The lady who teaches class is calling she remembered us.” It was so sweet. I confirmed it was ok for me to visit and I went to hospice that night a few hours later. The cashier and I met at the Hospice and we still just shake our heads on how things happen for a reason. The important part to mention is it was while I was shopping The cashier was putting stuff away. In passing we exchanged a smile and a hello. It was because of her kindness I choose her register when it was time to handle my transaction. I could have gone to any number of registers but it was the smile the simple hello , her kindness that drew me to her. If we stay aware of our surroundings. If we listen we just might hear and if we hear it’s up to us what to do next. It’s a bitter sweet walk that I walk but I wouldn’t want to be anywhere else than encouraging my brain buddies EVERY step of the way
AS MOST OF YOU KNOW: My true brain tumor journey started in 1992 when my grandma was diagnosed and in 9 wks died. My grandma was my first IFONLYFORONE. More about that on my website under my story. This BLOG is about my MEDICALIFONLYFORONE. It never occurred to me to count the one who pushed for answers. The one who helped save my life. For the sake of the story a quick background. In 1997 I was experiencing a lot of symptoms for what we thought was a sinus infection, relentless headaches then visual issues. I even was diagnosed by my dentist and treated for tooth pain getting a root canal HMM? Pain didn’t go away headaches persisted. MY Medical IFONLYFORONE is Mr. Grepling who earned the nick name GREPSTER. He was my fireball. It was in the summer of 1998 that Grepster said ENOUGH! My headaches were not giving up and he didn’t believe it was stress from work or family life and treatment for sinus stuff was not making things better. Grep was creative and said let’s refer you to a neurologist and see what they can do. HMO declined the referral. Of course we had to fight the system to see the new doc. WHALLA Grep got that through the red tape and worked it out. With the new doc together they got the much needed MRI. Oh, that was only because we threatened HMO that we were going to go to the State with a complaint they were interfering with my health yadda yadda . My brain tumor journey as you know got started as soon as I got the results. My point is Grepster was my MEDICALIFONLYFORONE! He fought for me. He cared enough to deal with the bureaucracy. 17 yrs ago was the start of NATIONAL MEDICAL SYSTEM CHANGES but he cared enough to fight for me. Well Grepster was my P.A . My primary Dr. is who I usually see and during a visit a week ago or so I got wind Grep was retiring. OMG panic set in. Last year my Neuro Onc retired, 3 years before that my neurologist of 14 yrs moved on. When it came to Medical Care system challenges she was a fire ball and the community dreaded her fights. Sadly the medical system changes caused her to close her practice and she took a job at the VA, I was devastated. Now Grep???? My go to person when I need a pistol. I truly was having separation anxiety. Don’t get me wrong my primary doc is amazing I have been at this office since birth ( NO JOKE) and seen my share of changes. He has been my doc for 30 years. There is just a special connection when someone finds cancer in your body and potentially saves your life. So after hearing of the retirement it was so weird. Funny how things work I got this crazy cold and choose to scheduled an appt with Grep. Ok so really no cold I told the scheduler I would be a cash pay patient. I wanted an appointment to wish him the best . Really cool for Grep is his wife was retiring also how AWESOME. We chatted on how the medical system has changed and for him it was time it just isn’t what it was when he started. He’s retirement age yet still young , healthy and well so I say GO ENJOY LIFE & YOUR WIFE! Well I still was feeling a bit sad. It’s weird because even my Neuro Surgeon retired ( but we are friends and talk all the time) so I am ok. This was different though. I left that day was sorta weepy but happy for he and his family. That was before Christmas. Now I kept thinking wouldn’t it be cool if I showed up his last day and dropped off a gift just to say you will be missed and be one of his last patients. Then I thought ok don’t get KooKoo. After all the office is staffed with girls and girls gossip so I figured its just a chapter closed and this was #MEMORYMAKINGMOMENTS at is best. I had plenty to keep in my heart after all he was my MEDICAL ONE great story. Well the morning of the 31st I get a call from my primary docs assistant to tell me some paperwork for my insurance was complete and if I wanted I could pick it up or they could mail it. Oh my goodness I thought “ITS MEANT TO BE!” I said I would pick it up and guess what. I got to deliver that card and let GREP know that I never realized he was the first MEDICAL ” IFONLYFORONE” He made it possible for me to help families in 21 countries almost all 50 states. I shared “Don’t leave thinking it’s a system that sent you away from a field you loved.” You made a difference, you helped people in places you never dreamed. The best part of the day ” I” was the LAST ONE! The Last patient he met with before retiring. As I parted I did remind him now that he is no longer my doctor he and his wife can now attend Gray Matter Foundation events because it’s not breaking the doctor rule LOL. He retires and I don’t feel sad I am happy that he was my medical IF ONLY FOR ONE. I close with this Galations 8:9 Let’s not get tired of doing what is good, for at the right time we will reap a harvest—if we do not give up.
My amazing relationship and bond with my Grandma Kirk started many years ago. I am her second grandchild of 9. I can recall visits as a young child to her home when she would baby sit. I of course remember visits and holidays like when my parents took us to her neighborhood to trick or treat. Oh how I remember the love she shared. I smile just thinking of her belly laughs. I remember all the good. My parents and I lived with my grandma for 2 1/2 years before my parents divorced. Living with her of course was a great relationship builder for me it couldn’t be helped. The time with my grandma created a special relationship different than the others had with her because it allowed me to become very close to her. She would take me to church with her and to her bible studies and I was even with her when the ladies had their Christmas parties and special get togethers. I am still friends with my grandma’s best friend Byra who led these groups. I reconnected with these ladies through Byra. It was great because all the ladies that new me as a kid shared stories of my grandma and how much I resembled her in appearance and they really loved to see me because I radiated her kindness. Something special I learned in attending their studies was Byra had kept the chair my grandma would sit in when she attended the meetings. It was a casual chair nothing heavy or super fancy but it was THE CHAIR my grandma sat in EVERY TIME she was at Byra’s. The chair was now kept in Byra’s room, her special reminder of my Grandma. When I first started visiting Byra and her husband they showed me it. Bob said when the time is right they want me to have it. I was so moved and overcome with emotion. I just couldn’t imagine the chair I sat next to on the floor as a little girl while all the ladies would have their bible study would someday be mine. I know it sounds trivial ITS JUST A CHAIR right? I am a firm believer in things are just that ….THINGS but this chair it has meaning. The chair she sat in when she would share her heartache ( believe me she shared a lot of personal heartache). It was the chair she sat in when she lifted her hearts desires to GOD. My grandma taught me about what was important. I watched her. I remember. I trusted her and she never failed me. She took me to church and I would someday take my kids to the same place and they would go to the private school there. She always told me and I never understood then but know now if you need someone to pray with call Byra she’s dependable. I used to think OK yeah right grandma. Then it was that one day in 1992 she was getting ready to have surgery to remove her BT and reminded me if you need prayer call Byra. Sorta scared me why would I need to call Byra if she was going to be ok. Guess what six years later me at 28 I was a single mom diagnosed with Brain Cancer & I went on a mission to do what my grandma said. Find Mrs Byra. I found her! the story unfolded and I am blessed with more memories than I could have dreamed. This small group of less than 10 beautiful ladies over 17 years later were now my new grandma’s , aunts – Friends just like my grandma told me. Now Sept 15th 2015 would have been my grandma’s 85th birthday she died 23 years ago so the only connection to who she was outside of a few family members are these ladies who are aging also. Well Mrs Byra called me last week and asked me if I would pick up the chair. She didn’t realize it was my grandma’s birthday I think GOD did. I of course right away asked if everything was ok???? She said yes. I scheduled the pick up. I got to visit with my grandma’s best friend and also got the best gift ever. The Chair . Byra reminded me that this was the chair my grandma would sit in EVERY TIME she was at her home. She wanted to make sure I had it. SEPT 15 2015 I received a gift and not just a chair! It was a chair that WAS THERE. It held the person I loved. The arms are wooden you can feel where over the years it has been touch. I have the chair in my extra room with my Bible next to it. I now go and sit and don’t have to say anything just reflect on the memories. She touched those arms, this held her body , her burdens, her love. It’s not just a chair. This is a chair that held my grandma when she could be who she was. She didn’t have to put up walls , she could share heartache and know she would still be loved. She trusted when she was in this chair, best of all I was blessed to be part of the memory.
August 30th 2015 marks the 23rd anniversary of the night my grandma took her last breath. I would like to focus on what the day did for me. I would like to focus on how that night changed my life for the better. It was this loss, this moment, the journey, the moment in my life that would be my life changer. Although that night broke my heart I choose to take the power from the three letters GBM ( that is an AGGRESSIVE brain tumor) that caused her death and focus on the peace. If you know me you know my faith is 100% of what gives me my peace my strength. If you know my story you know I lived with this grandma a good portion of my young life and that her foundation for life was her FAITH. Knowing her faith was her comfort then you will understand that it was for that reason I was able to find some comfort when dealing with the finality of her death. It was her reassuring us, “the family” she would be just fine because when she died she would be in heaven with her Savior. This was 100% of how she lived. I choose to keep the memories of how she lived and how she professed to be for eternity as my comfort. Brain tumors are not a pleasant journey when they decided to go crazy. 23 years ago and the fact she opted for no treatment after surgery her BT journey was short. She was diagnosed on Father’s day and approximately 9 weeks later I was watching her take her last breath. Those days leading up to that evening were such a whirl wind. I will spare you the family turmoil which that in itself is heartbreaking to say the least. Families should come together not divide another reason for my passion to share hope, kindness and knowledge about how this disease can destroy more than the patient if not prepared to cope as a TEAM. I know reading my words , telling you the bits and pieces of my journey only touches the surface. Pain is personal. I never want to imply mine is more painful than yours. Each family copes differently. The fact is I miss my then 62 year old grandma. I hope you know I hurt with you when share your pain. I’m also happy when we celebrate your success, your milestones your TUMORVERSARIES , the completion of treatments. I love it when we are “CELEBRATING” YOU. I believe in success, Faith &Hope & Love and I sharesupportnotstatistics and believe in what I say because I have seen just as much good even in the sad. This day 23 years ago sparked something so deep I had no idea then but now I know it created what I was meant to do in life. Who could have imagined that my words “I WANT TO BE A VOICE FOR THE CAUSE” six years later would mean I would start a personal journey and experience first hand the pain of brain cancer physically. 7 years after that I would be the founder and president of a non profit called THE GRAY MATTERS FOUNDATION. I currently communicate with families in 21 countries and just about all 50 states. So today I choose to share the goodness this journey brought. Thank you grandma Kirk. Thank you for the years you taught me so much. Thank you that when I needed the education most I was prepared. I encourage all of you reading this take time to learn in all you expierence. Slow down and have ears to hear, eyes to see and words to make a difference. It won’t be perfect but sometimes right in the middle of the pressure you are being designed for your purpose. The seed of your success might be growing and someday you will know that what you are doing is everything you were created to be. It was that one night 23 years ago that started my walk to find my ifonlyforone and I didn’t even know it. *PS. TODAY I WILL CELEBRATE AND ENJOY A DONUT AND COFFEE IN HER MEMORY
Today April 7th 2015 is my Eight year SURGERAVERSARY. 8 years since my last surgery which was surgery number 5. It’s crazy to read and even more strange to type. I have been cut on FIVE TIMES. Although it is not defined in the Webster’s Dictionary anyone who has survived a major surgery understands the annual reason to celebrate. I try never to take for granted that I am always an MRI away from hearing those words the BT has returned- but it does no good to worry so I live life and share the same with others. I try not to stress & always focus on being blessed. Thank you for being part of my journey.
I would like to thank all of my brain buddies who were able to attend my SWEET 16 Celebration #GMFsweet16. It was an amazing celebration and the turnout was beyond INCREDIBLE. Some extra special moments : one was when my high school journalism teacher surprised me. She immediately rushed over to the party after flying in from out of state to be sure she didn’t as she said “miss the important celebration”. I had no idea she would be attending and it was only when this person snuck up behind me and put their hands over my eyes and I turned around to look….it was MARY BETH aka MB or Mrs Reed, my teacher now friend. My neurosurgeon Carrie Walters stopped by to share her love and she is in the photo’s. So many attended. I’m told it was over 200 and forgive me if I don’t mention you personally because everyone is equally important. Thank you to Damian Hartze for hosting our event at his restaurant The DIRTY PELICAN. He is a high school alumni who graciously helped us raise money and celebrate. Many of my high school alumni who have supported me on my journey were there. It’s crazy and so heart breaking after supporting me on my journey all these years now some of their family members have been touched by this wretched disease. One thing is for sure we stick together and walk the walk making the journey a little easier to travel. I can count on them and they can count on me for sure. My husbands softball team mates and their families attended. This disease does not discriminate, not to long ago one of the teammates who had been supporting us on our journey was diagnosed and died. If you take a peak at the photo album the team mates put together a basket in his memory it is the RAIDER basket . My sister and her boyfriend came in from out of state. My daughter even attended which really made me happy. Two of my cousins were there and they got to say hello and thank you to the surgeon who most of you know was the same Doctor who operated on our GMA in 1992. My cousin hadn’t seen her since then. Always there for me through thick and thin and through the years MY dear friend Brigitta who has known me since I was 14. She has been an amazing force behind why I am here today. I can always count on her and her moral support. Many! of my brain buddies attended and submitted baskets in honor or in memory of their loved one. One of my brain buddies who was a HUGE! supporter of gray matters foundation & was a devoted BRAIN BUDDIE. She earned her wings only a few days earlier but her husband Scott Lavery their family & their friends attended. I still believe she attended in spirit FRIENDS TO THE END Cindy LOU! We truly are about #supportnotstatistics . Thank you to my board members who helped Sue Swift and Greta your help with the ticket sales and set up was appreciated. Thank you Carrie Treadwell having you there to celebrate with your daughter meant a lot thank you for attending. Flo and Paul Jones as always you are faithful to show up at “every” event we have we appreciate your love and faithfulness. My best friend SHELLIE WELLIE who made a gift basket in my honor and shared our personal journey through the years. Awww and Stefan Moore founder of CRT who opened his heart and shared the story of the loss of his daughter. He wrote a letter that shared the loss but described and shared the beauty of the life she lived. Scott and Becky who represented the Snyder family. Thank you for the picnic basket and all the extra goodies you brought on behalf of your family in honor of your father. Awww and my beloved Mr. Sanders although no longer here on earth he was represented when his daughter MY FRIEND Janice and her husband Tim Paul not just attended but also donated several baskets to help raise money for my cause. ( not in attendance but a force behind preparing the baskets and always helping are Mr. Sanders grand children also Chris and Sophie) There were countless Brain buddie families who’s attended . Many of the families said they wanted to show to support me because I had touched them by helping their loved one who has since died. They wanted to show and share their love and say thanks. It was amazing! Even our favorite MRI tech Carl showed to celebrate. It was awesome because those of us still getting our scans at Stjoes hospital were excited to see him. It gave us a platform to give him the recognition he deserves. I had friends from my banking days attend. There are a few of the BANKING BUDDIES who have stayed close to me through the years. Jules aka Julie Cooper and her husband attended. Sandra K attended. There is a special story about Sandra K , she was the coworker who took the phone from my hand to speak with the doctor that called me to tell me while I was sitting at work I HAD A BRAIN TUMOR. She helped me take in the news that life changing day. I was so happy to publicly be able to thank her for what she did for me. Since being diagnosed myself 2 others at the bank from my office have been diagnosed with brain tumors. Greg now a survivor and his wife Michelle attended . Scott the other banking buddie BT survivor was not able to make it but supported GMF with a contribution towards that event and has supported us GREATLY over the years and continues to do so. Red Balloon at www.redballooninc.com attended and without them and the social media support and education we would not have been so successful. I can’t say it enough how much they have helped in our success. I can’t forget to mention the amazing guitar donation from @CARRIE UNDERWOOD. The winner of the guitar went to a brain buddie who lost her best friend to the tumor. I happened to have been with the friend when she took her final breath so this connection was even more special. She wrote on the ticket her friends name with a message this is for you AMY who knew that would become the winning ticket. Thank you to my mom and dad ( & step mom )who attended. It’s not often they get to attend so having them show was nice.
I saved the best for last My Husband. He was and is always so kind and supportive towards my passion and mission for THE GRAY MATTERS FOUNDATION. He helped set up and plan the NIGHT OF EVENT. He made the raffle fun and made so many laugh. He has a tough job because when everything is taking place he always makes sure I am ok and not pushing it. The evening would not have been as wonderful as it was if it were not for him helping me stay organized and pulled together. ( I know its hard to believe but it takes a lot to keep my schedule on track and he is for sure a big portion of why I am successful. He is my TOUR MANAGER LOLZ ) It’s all about TEAM WORK! that’s for sure. It was a great night. I could go on and on. There is one thing about life with the sweet always comes a little bitter. Since the party 2 near and dear to my heart have died. It reminds me I must keep doing what I do. People need to know they are not alone. Thank you for being part of the beauty in my life . Lot’s of Love your Brain Buddie, Lanette
It has been said ” YOU LIVE AS LONG AS YOU ARE REMEMBERED” -a Russian Proverb
I have been thinking about my New Years blog. What to do? How to start off the New Year and not write about the typical topics -Cleaning out the clutter-New Years Resolutions or the NEW diet. I figured we can always talk fresh starts, so I chose to stick with a topic that is true to me “CREATING MEMORIES” , being remembered.
I wouldn’t be me if I didn’t take a light hearted fun approach to my topic. The typical way to document or help others remember you is answering the basics Q & A style. 1) date of birth 2) where were you born blah blah boring. Ok boring is harsh but that would be ordinary, same old stuff. I am anything but ORDINARY.
I thought for January we could start something fun. My hope is of course that you will participate. The project will require some written participation ( There is something about the written word.)
The idea is GMF will post fun questions for you to create memory making moments, a “TO BE REMEMBERED” , did you know? book. This is meant to be a fun project not a boring HAVE TO. We are looking forward to interaction on the fan page. Everything we ask you to answer is for your keepsake. If you want to share that’s up to you. We hope this will help you create a fun #memorymakingmoment.
YOU WILL NEED:
a note book/journal Call it what you like. You need something to write the questions and answers on. Be sure to number each question and write it along with the answer.
Here is the plan,
We are going to give you a question a week on MONDAY. We just want you to be sure to write it in the book and answer it. You can ask other friends and family members to participate it will be a fun way to have written #memorymakingmoments it’s our #didyouknowMondays.
We may post extra questions throughout the week add those if you want.
If you have questions you want us to share send privately and we will post to the group or You are also welcome to post the question in the comments .
Life changes everyday let’s LIVE and be remembered. (Our questions are to just get you writing)
* BACK ROUND TO THE IDEA.
A few years back probably 15 I gave my G-ma and my PAP PAP books about sharing memories. The books were a question a day books “tell me your memories”. Well my PAP PAP finished the book as soon as he got it so in 1 year. It is my treasure. (he died from Alzheimer’s. 4 years ago) What is so awesome about the book is it is in his hand writing. I learned so much about him some I knew but a lot I didn’t. What a gift a little book with some simple questions but to see his handwriting forever. I learned His mom my great grandma was a candy maker. ( PROOF I WAS DOOMED to HAVE THESE HIPS lol) & double whammy because my dad’s mom My GMA was a donut maker BOTH SIDES OMG born to be a sugar addict it was in my blood for sure LOL.
Anyhow I gave the similar book to my grandma his wife ( She’s 91 I over see her care now). She took a little longer 12 years later I got it back. It’s wonderful to read and I am so glad I have it but I must say the fun questions I ask her out load now that she is 91 is even more fun. For example I learned my grandma at 89 had never had a pedicure or manicure or GIRLS GET THIS she never had a bubble bath. Well as you could guess YEP this crazy NON ORDINARY grand daughter helped give her 89 year old gma her first BB.
SO many other questions I ask that I am sure many of you would crack up if you knew. It’s the answers that would have you ROFL. I will save for another blog.
Reality check : (
Having my dad’s mom died young 62 and the family was in great turmoil over it. No time for gathering anything that wasn’t already written. My only memories are what is in my head. I have maybe two photos and one piece of paper with her handwriting I CHERISH IT! Reflecting on this , I chose to use this situation as a way to make my pain not be in vain. It was the nudge to share what’s important being remembered.
After working on this post I did find links to some memoir books. I will post links to where you can buy the books and get the basic need to knows answered. They have them for MOMS, DADS, G-PA, G-Ma, & I encourage you to get them. Great gifts. You will be glad you did. I completed one for my kids shortly after I was diagnosed so my kids have one from me. Don’t wait for an illness. Do it just because. Please if your loved one can’t write ask them the questions write their answer. Brain Buddies life is fragile we know that. We will all be remembered, the question is HOW?
Let’s have some fun #MEMORYmakingMOMENTS #DIDYOUKNOWMONDAYS
In November, Lanette had the opportunity to attend the 19th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology presented by the Society for Neuro-Oncology. During the event, she was able to witness the unveiling of some exciting news! For the first time, it was announced that doctors have discovered a new treatment plan for patients with glioblastomas.
Doctors have created a device that glioblastoma patients can wear on their heads. Patients place the cap on their scalp and wear it constantly. The device provides low intensity electrical fields that stop tumor cells from dividing. Patients who received the treatment lived three months longer on average! Although this is not a cure, that is an amazing step forward in providing patients with more time with their loved ones. After the success of the treatment for glioblastoma patients, doctors are considering other applications for the device.
Below are pictures from the conference provided by Chris Tee from the International Brain Tumor Alliance. The New York Times published an article on the new treatment, click here for the full article. Have questions? Need support? Contact Lanette at firstname.lastname@example.org or 623-205-6446.
Here is Lanette’s take on the exciting weekend!
“My trip to Miami was action packed. Always nice to see those I know and it was great to catch up. Funny when you have to fly to another state to catch up with those that live in the same state. I met up with my good friend and BESTIE BRAIN BUDDIE Sheryl Shetsky President of Florida Brain Tumor Association aka “BRAIN TUMOR DIVA”. We used this opportunity to connect with the medical community and put a face to our organization. Our goals were to share what we do in the brain tumor community with those we didn’t know( educate them of our mission statements which are very different) #2 remind those who do know us that we are still ALIVE “SURVIVING” and remind them we are here to support any of their patients and families. Of course Sheryl’s FBTA raises money for research so her conversations were a little different but we both did what we do best. A big part of attending events like these is to learn lot’s so we can stay ahead of the tumor. What that means is: NEVER CHASE YOUR TUMOR!!!!
Sheryl taught me in one of the first conferences I attended stay ahead of your diagnosis. Never wait for the reoccurrence to start survival search. Stay ahead of it know what’s out there. What are the new and up and coming treatments-technology. What docs are doing what. Well we followed her rule and did just that. We attended the education day and even participated in some lunch break out sessions. Of course this is a doctor and researcher event so some of it was over my head FOR SURE! Over all good things are happening in the world of brain tumors A LOT with GBM’s. The most moving breakout session for me was Neuro Oncology Caregiving. What Do We know and Where Should We Go? Obviously if you know anything about GMF you know this is my heart.
This year’s attendance at SNO I met and established what I am hopeful will be some long lasting friendships. We attended the welcome reception where we had the chance to catch up with Sheryl’s good friend, board member and moderator for FBTA conferences Dr. Steven Brem and his wife , we also met with Arizona’s very own Michael E Berens from TGEN and his wife. I even shared photo’s on our fan page of some of the researchers who think BRAIN TUMORS STINK! Lastly and a worth mentioning “IF ONLY FOR ONE” (I had so many but this is the best ) The Gala was on Saturday and over 300 attended. It was held at the Perez Art Museum it was TOP NOTCH! We could sit where we choose it was a nice outdoor event moonlight just beautiful. The table is a ten top. We are chatting with several of the people at our table and one of the people at the table is the President and CEO of a company that develops oncology drugs. The IF ONLY FOR ONE PART. So we are talking about longevity and how Sheryl is 25 years out with a brain stem glioma and me with Grade 3 Aniplastic Oligo. We talk about GBM buddies and of course I honored my beloved sweet friend david m bailey. This man lives in the same small town david lived in. He starts to tell us how when they invested in this “brain” treatment people started talking about a young man who had lived with a brain tumor yadda yadda. Well Ta DA, I honored my promise. I was able to share the legacy of my sweet friend. I put a face to the young man who was the man who shared hope through word, song. Funny how these things work. I attended my first SNO conference when I managed David’s tours, and would only see him at FBTA conferences. I think our one was not seen but was still close at heart. We had a great weekend.”